Local Community Connections Can Help You Manage DME Physically and Emotionally

When your worsening eyesight makes life difficult, leaning on your ‘village’ can make all the difference.

People are inherently social beings, and cultivating a strong network of people around you has benefits beyond your social calendar. It can affect your physical health and emotional well-being, especially when living with diabetic macular edema (DME).

Because DME affects your ability to see, it brings logistical challenges to staying social. For example, you may feel uncomfortable walking around your neighborhood alone or meeting friends in new locations. As a result, social withdrawal and isolation are common, yet underserved, aspects of the condition, says Vaidehi Dedania, MD, an associate professor in the department of ophthalmology and the program director of the retina fellowship program director at New York University Grossman School of Medicine in New York City.

From a medical perspective, “The DME is what we’re taking care of, and you only have so much time in that appointment,” says Dr. Dedania. “We don’t always get into the, ‘How’s this affecting your functioning? Are you okay?’”

People with DME deal with more than vision loss, though. “They also have medical problems, they have interpersonal relationship issues, they have financial concerns,” notes Adrienne Wexler, a clinical social worker with the Lighthouse Guild in New York City. So, she says, you have to step back and address the big picture. Connecting with community resources to establish your “village” can help you do just that.

What Experts Say: How Community and Connection Affect Your Health

“When you get a diagnosis that changes your life, it automatically sets you apart in many ways from other people,” says Jocelyn Tapia, a clinical social worker with the Lighthouse Guild. “And there’s a great sense of fear and loneliness in that.”

But leaning on the people around you instead of shying away from them can help you through the trying times that come with a challenging diagnosis like DME. In fact, research shows that family members are highly influential when it comes to helping a loved one manage chronic illness.

Tapia suggests starting by inviting a family member, friend, or partner to one of your appointments, so they can listen in and get more educated about your condition. “Knowledge is power,” she says. “And when your loved ones have a better sense of what you’re going through, they can help on many levels.” As a result, they may understand better how to offer help from a practical standpoint with things such as making adjustments and accommodations, especially around the home, to help ease any fears you have and keep you safe, she adds.

“When your loved ones have a better sense of what you’re going through, they can help on many levels.” — Jocelyn Tapia, LMFT

Involving your family and friends in your care can also provide emotional support. “When you involve a loved one in your world in terms of, ‘This is what I’m going through. This is my new normal,’ I think it helps people feel less alone,” says Tapia. It also helps your loved one understand what’s to come. “Because vision loss affects not just you, but the entire family as well.” 

Sarah’s Story: Connection at Every Corner

Sarah Castaneda, 40, has been living in the same neighborhood in Wilmington, California, her whole life. So, when she was diagnosed with DME in 2017, she leaned on her surrounding community, who went above and beyond to help. “Even when my kids were little and they needed rides to school, picking up medications, going to the grocery store, bringing dinner for me and my family … they’re not just neighbors. They’re family,” she says.

“They’re not just neighbors. They’re family.” — Sarah Castaneda, diagnosed with DME in 2017

Castaneda’s tight-knit family also plays a large role in supporting her. “My mom is my rock. She’s my best friend,” she says. Her mom offers not only practical help with cleaning, cooking, grocery runs, and attending doctor’s visits, but also emotional support, which has been an invaluable resource as Castaneda went from being a caretaker in her family to needing care herself. 

The pair frequents the Castaneda family–owned Mexican restaurant after medical appointments, where community and comfort food go a long way. “I remember eating these dishes from when my grandma used to make them,” she says. And just walking through the door and being greeted by whichever family members are working that shift offers her a sense of belonging like no other.

How to Stay Connected When Living With DME

Even if you don’t have family, friends, or other loved ones nearby, there are plenty of resources you can tap into. “The way to empower someone is to allow them to know about [community] services that are available,” says Wexler.

Connecting Beyond DME

When it comes to fostering networks in your community, focus on what matters and is most interesting to you, Wexler advises. It doesn’t have to be specific to DME or vision loss. You can:

• Sign up for adult day programming. “Look up organizations in your community, such as an adult day health program,” says Tapia. “Some senior centers offer workshops and lectures on different topics, which connect you to community gatherings.”
• Reach out to religious or spiritual organizations. To meet like-minded people, reach out to local congregations or places of worship that align with your spiritual beliefs. 
• Volunteer. Finding opportunities to volunteer with local organizations not only connects you with others in your community, but also provides a sense of purpose and helps boost your physical health and mental well-being.
• Make friends with your neighbors. Put yourself out there. Research shows that being friendly with six or more of your neighbors can lead to less loneliness.
• Join a local hobby group or club. One study found that joining others who share similar interests can increase levels of happiness and life satisfaction.
• Consider a service animal. Wexler recommends getting in touch with a program such as Guiding Eyes for the Blind if you’re interested in a service dog. “Having a guide dog as a friend, as a partner, as someone who can get you out of the house while feeling safe … makes such an enormous difference,” she says.